Comments on: "Patient list of good hematologists" (6)

Sorry, Karen you followed an old 2013 link. (Where did you find it?) The link at the bottom of MPNforum Magazine — The List of Patient-Recommended Hematologists — was updated recently and lists 227 physicians..(www.mpnforum.com)

How do you vet patient recommended hems to ensure they do in fact specialize in MPN’s/MOD’s?
Some are clear well known specialists. Please comment on vetting criteria to allow Docs who are NOT as well known or part of MPD-RC

Hello, Kim… Good question. The List of 100+ Patient-Recommended Hematologists is exactly that. These are doctors recommended by their patients with MPNs. Their recommendations are based on direct experience and outcomes. In many cases it’s possible to talk with the recommending patient. The “well-known” specialists — some of whom may not be on the List — are not necessarily recommended by their patients and are therefore not included. MPD-RC, as you know, is essentially a research organization founded by investigators. While participating MPD-RC doctors clearly know their MPN stuff, that doesn’t necessarily make them physicians their patients would recommend. As to specialization, some of the very best and most popular MPN physicians are not board-certified hematologists. In my own experience, beyond competence in myeloproliferative neoplasm, a physician who listens and is open-minded and searching for optimum therapeutic solutions for his or her patient is both rare and invaluable. The MPNforum LIST, by far our most visited page, has helped many make that connection.

it sounds great to have a doctor who under stands the myeloproliferative neoplasm blood cancers.I have E.T.and have yet to have any questions answered in regards to the
symptoms of E.T. or the side effects of the chemo medications.
I don’t know what I would have done without the information and support I have received from M.P.N.voice U.K..